Saturday, December 13, 2014

Technology and Development

Whether you have, like, or use technology such as an iPad or smartphone, there's no denying that our kids are going to be whizzes with ALL of it so we might as well get on board! There is no single tool/toy that has helped Wes progress more than the iPad/smartphone, hands down! We are so blessed to have an iPad that we are able to dedicate almost solely to Wesley's apps and we use it DAILY for everything from movie watching to high chair games to practicing any number of developmental moves!

First recommendation, child proof iPad case. I mentioned this in a previous post, my brother all but made me buy a Fisher Price iPad case when Wes was about 18 months old and thank goodness he did! Once I felt safe letting Wes play with the iPad (drop it, throw it, etc), dozens of opportunities suddenly opened up for its usage!

One of the biggest ways we've used the iPad was to get Wes to move! Simple moves we take for granted are huge feats for Wes such as rolling over, holding a crawl position, pulling to stand, walking, etc. Wes is what I like to called determined, but not necessarily motivated. If something is too hard to get, too far away, or he's weighed the amount of energy it would take to play with the toy versus the fun he would have and they don't add up, he just moves right along to something else. The iPad, however, is a motivator for him... and we take full advantage of that! So, we find some apps he likes, place that bad boy just out of his reach, and motivate him to get to it by working on whatever skill we need to work on. This tool has helped tremendously with crawling and holding the crawl position... I put it out of his reach to make him crawl to it, then lay it flat on the floor so he can watch/play while holding the crawl position. I also love propping up the iPad on a low table and sitting with Wes a few feet away so he can see it. Then we practice standing from a sit or from the ground, walking, and pulling up on the table to get to the iPad. Works like a charm and he is always determined to get to that game no matter how many times it takes him!

The iPad has also been a lifesaver at therapy. Just like at home, he weighs the benefit to himself as to whether he wants to do what his therapists ask, so if it's not worth his time then we can forget getting anything done! Que the smartphone. Once I bring that phone out and he hears the music of one of his favorite apps, he'll walk the whole hall or crawl through every tunnel they have to get to it. I can't count how many times my phone has prevented meltdowns with the PT, Speech, and OT!

We also like to use the iPad in the high chair. I'm not a big fan of letting kids watch TV or play games while eating, however in Wesley's case anything to keep him distracted while trying to eat by mouth prevents him from throwing a bigger fit than he already does. We have to pick our battles. In the high chair, though, we're able to work on OT and comprehension skills such as pointing, cause and effect, matching, identification, dragging, and more! He stays focused in the high chair and can really concentrate on the apps, so we're careful to target certain apps that align with skills he needs to work on. We also work on his weak hand in the high chair. We have a restraint cast that we put on his left arm to block the use of his hand, forcing him to use his weaker right hand/arm. We put apps on the iPad that only require him to tap the screen or have simple buttons to activate, that way he gets practice using his right arm to hit the screen without frustrating him. Honestly it has tremendously helped Wesley's aim and coordination with his right hand!

No matter how you use it, the iPad can be a wonderful tool for development! What are the best apps to get though? I subscribe to Smart Apps for Kids and they send me daily emails with free recommended apps for kids and kids with special needs! These are very helpful for ideas along with recommendations from family and friends. But, like any toy, kids can be finicky so it's always a battle trying to find apps they like. Wes is a stickler for the familiar, so it's a bit of a struggle when introducing new apps to him because they're unfamiliar and make him uncomfortable.... even though he gets completely tired and bored with the old ones. I have to slowly introduce new apps by turning them on every couple of days and playing with them with him... eventually they become more and more familiar and he actually likes playing them instead of whining when I put them on. It's a process! I especially love, when picking out apps, the free (of course) and "lite" versions because you can try them out before paying for them.

So, here are the apps that have worked wonders with Wesley:

Fisher Price

Basically ANY Fisher Price app, especially the baby ones, are home runs in our house! These are great for cause/effect, pointer skills, learning shapes, colors, numbers, etc. Here are the titles of our favorites, and they're ALL free!!!

This group has tons and tons of kids apps, but Wes really likes the music based ones! These apps come with an animated nursery rhyme song, then several related games. They are great for cause/effect, identification, pointer skills, and more... and the great thing about these apps is they have a lite version, so you can try them out first... then if you like them, they're only $2-3 for the full version. WELL worth it...

* The Wheels on the Bus - All in One Educational App (FAVORITE!)
* 5 Little Monkeys - All in One Educational App
* Itsy Bitsy Spider - All in One Educational App

* ABC Song - All in One Educational App

* Kids Song Collection - Interactive Playful Nursery

* Farm Friends: First Numbers and Animals (another FAVORITE)

There are dozens of different nursery rhyme apps with this group so check them out and grab the ones they like!

Baby First

Baby First apps are super cute... they have two different main characters Wes loves, a little blue Peekaboo baby and VocabuLarry. These apps are great for pointer skills and identification... they have lite versions, then full versions for a couple of dollars.

* Peekaboo, I see you! (FAVORITE)

* Play with VocabuLarry
* VocabuLarry's Things That Go book

* VocabuLarry's Things That Go Game

MyFirstApp

These are fabulous apps for teaching identification, pointing and dragging skills, matching, and more! These are free to start, then if you like them you can get full versions for a couple of dollars...

* Match it up 1, 2, and 3

* Families 1

Lucky Ducky Studio

These are super cute for teaching pointing skills, characters and storylines, identification, and more! I think these were a couple of dollars but again they have a lite version so you can check them out first!

* Toddler's Playroom - Fun & Learning All in One

* Kids Policeman

* Kids Fireman

Here are some random apps we've found that are hits with Wes...

* Knock Knock Family - Toddler's First App

* The Alphabet Train for Kids

* Dusty the Digger

* ABC Ninja - The Alphabet Letters and Phonics Slicing

* Sago Mini Ocean Swimmer

* Animal Band - 3D Interactive Music Toy

* ABC Wow! - Kids' Alphabet Flash Cards

* Talking Paul

* WATCH Disney Junior

These are just a few of the apps we've used over the past year that have been favorites! If we discover any new hits we'll be sure to share!

Monday, December 1, 2014

The G-tube

No parent wants their kid to come
home with a G-tube (or any assistive device), but rarely do we have a choice.
Wesley has a G-tube, which he received in the NICU, so we're going on 2+ years
now. Unfortunately, like most babies who get a G-tube, Wes had really bad
reflux and aspirated when we tried to feed him. It sucked, but after 100+ days
in the hospital we would do anything to get him home. The doctors will try to
tell you they’ll only have the tube for a few months, at most a year. I'm
sorry, that's a lie. Once you eliminate the culture and function of eating from
a baby’s life, the process of teaching that to them is HUGE. Not only do the
muscles in their mouth weaken tremendously, but the flavors and textures
associated with food that we take for granted become major sensory issues.

For anyone who doesn't know, a
G-tube is a tube surgically inserted into the stomach. All food goes directly
through the tube instead of through the mouth. Initially they get a long tube
with a port at the end where a small machine (similar to an IV pump) pumps milk
into the stomach. There's a pump and a pole that follow them around whenever
they're eating. You can also get a little backpack that holds the pump so they
can be mobile while eating. After a few weeks you can swap out the long tube
for what's called a Mic-Key button, or a smaller port, that's much easier to
maintain. Is all of this ideal? NO... we hate worrying about it pulling out all
the time (first CON) and Wes having this little white tube popping out
of his stomach (second CON). BUT, at the end of the day it's not as bad
or intimidating as a lot of people think. In all honesty, it has been a
blessing....

G-tube Feeding Progression

Wesley's G-tube feedings have gone
through a major progression. When we first came home he was on 24 hour
feeds.... NOT fun. We couldn't go anywhere without the pump. It’s hard to work
on anything developmental (another CON), especially tummy time, when
you're connected at the belly and going out is that much more complicated.
Slowly, we were able to wean him to three hours on, one off. Then two hours on,
two off. Then finally one hour on, three off. This took months of transition
and he ate all breast-milk (highly, highly recommend! I pumped for seven
months, until I was completely dried up, and froze it all for later). Finally
at about a year old we were able to bring him down to 30 minute feeds every
three hours. We also started introducing rice cereal into his milk to see if we
could bring more solids into his diet. Warning.... do not put rice cereal
through the pump! The pump ends up miscalculating the volume/time and they
don't get the full meal. That realization led to the biggest transition for
Wesley's G-tube feedings.... the 10cc syringe.

Completely by accident I forgot
Wesley's pump and bolus venting tube while out one day and needed to feed him a
bottle. I rummaged through the diaper bag and found the 6cc syringe you get
with the Mic-Key button set, the one that fits directly into the G-tube. I used
that to suck up the milk and feed him….. it worked beautifully! It then dawned
on me that I should start feeding him every meal this way, especially since the
rice cereal wasn't working in the pump. So, I found a 10cc version of the same
syringe and started direct feeds that way and we've never gone back. Now,
instead of connecting the pump to feed him his meals, we've transitioned
completely to syringes only. Here's where the G-tube PROS begin....

Healthy Benefits of a G-tube

We didn't want Wesley to be on milk
forever (my breast-milk ran out around a year) and the Complete and Pediasure
milk they typically recommend for G-tube kiddos was way too rich for his
sensitive stomach, so what to do? We asked ourselves, what is the first thing
you introduce to a baby by mouth (besides rice cereal)? Baby food right? Sweet
potatoes maybe.... or applesauce.... something bland with little texture. Well
if a typical one year old could eat sweet potato baby food, why not Wes? So,
one day we tried it. We bought a jar of sweet potato baby food, sucked it up in
the syringe, and went for it. Worked like a charm. I asked my friend who also
had a one year old how much food she feeds him for each meal. We made a chart
for each meal and started cooking (we make ALL of Wesley's food.... will post
separately about that!) and blending. Currently Wesley gets two four ounce
bottles of almond milk (morning and night) and ten ounces each of blended
fruits, veggies, grains, and proteins for breakfast, lunch, snack, and dinner
per day with lots of water sprinkled in throughout the day... all via 10cc
syringe fed directly into the G-tube (usually while Wes is in the high chair).
PRO number one! As an added bonus, meals this way are virtually spotless.
No messy faces, messy hands, messy high chairs, messy floors! Just saying…

Understandably, this feeding method
may not work for everyone, but we cannot stress how much this process has
positively affected Wesley’s growth and development and what a blessing it has
been. He eats nothing but healthy and nutritious food! One of the
most memorable things our surgeon told us before we left the hospital was that
in order for Wesley to develop and function with his brain bleed, he needed to
GROW! Wesley's brain needs constant nutrition and nourishment to allow the
healthy parts of his brain to take over for the damaged parts. We took that
completely to heart! We bought a scale and weighed him almost every day (NICU
habit), kept a chart, and NEVER missed a meal (well almost).

Some Pros and Cons

One major PRO of a G-tube is
complete control over the amount of food Wes eats. We know exactly how much
food and calories he is eating every single day. This is extremely important
for a number of reasons.... weight gain being number one. We've never had to
fight with Wes to eat a meal, panicked if he didn't like it or wouldn't eat
something, or worried whether he ate enough on any given day. This can also
work against you, however (insert CON here)…
having complete control means your child has no self-regulation or control of
their own. It’s hard to always know how hungry they are, if and when they’re
thirsty, or if they need more or less food. This can be a major source of
stress, to me at least!

On the flip side, when Wesley’s sick
this can again come in very handy (back to a PRO). We asked the pediatrician the first time Wes got sick if we should
still feed him regular meals since kids typically don’t like eating when
they’re sick. YES! As much as seemed reasonable and that he could tolerate,
especially the fluids. She explained that he needs those calories to help him
fight the illness and to keep up his energy. Makes sense… and very true, Wes
somehow seems to have an abundance of energy even when he’s sick (maybe not
such a good thing). In a related sense, the G-tube is also handy with medicine
(Wes is on a seizure med that tastes horrible), which can go directly through
the tube so he never has to choke or gag on them (another major PRO).

Meals while sleeping are also an
amazing PRO. We are able to feed Wes even when he's sleeping, throughout
the night or during naps. This is extremely convenient and important for those
of us with weight gain problems because you never have to stress about them sleeping
too long and missing a meal (particularly when they’re really little), they can
still get the calories in! It’s also nice because a baby with a full belly
sleeps really well. When Wes first came home he would get his first meal of the
day around 6am... we could plug his pump in without him even knowing and he
would sleep right through the whole meal until 8 or 9am. I'm not saying we
weren't still exhausted getting up every 2-3 hours to reset the pump throughout
the night (putting this on the CON list)....
warming the milk, setting up the pump, flushing it, priming it, venting him
(letting out any air), plugging it in, etc. PURE EXHAUSTION! All parents go
through this with new babies of course. The difference with G-tube babies is this
phase lasts a LOT longer… months and months longer
depending on how many meals you have to get in per day.

We Don't Force It

With all this said, of course we
hope Wesley will eat by mouth sooner than later. But one thing my husband and I
agreed on from the start was NEVER forcing Wesley to eat by mouth. His growth
and development are our number one priorities always.... at no point will we
starve or withhold food from him to force him to eat. We know people who have
done this, and yes their kids eat, but many times the kids have sensory issues
and weight gain problems. These are two things we are committed to avoiding,
along with any trauma this would cause for him (he’s been through enough!). We
know Wes can do it, he’s passed his swallow studies and has no medical reason
not to eat now. We get frustrated, though, when we hear people tell us we
should let him get hungry and that will make him eat. Not true. First of all,
Wes shows virtually no signs of being hungry (another potential CON). Secondly, just because he’s
hungry doesn’t mean the muscles in his mouth magically know how to process the
food or handle the textures and flavors. By not sucking, chewing, or
swallowing those muscles become very weak and uncoordinated and the senses
become very sensitive… they need practice to be able to properly function to
eat full meals (add major CON here).
No amount of speech therapy can fix this overnight… all you can do introduce
the food, practice, stimulate the muscles as much as you can, and show extreme
patience! We’ve learned the more we force Wes to eat by mouth, the more
aversive he becomes.

I saw a post on Facebook once that supported
avoiding the use of the G-tube to make a child eat. It read something to the
effect of "no one wants a kid with a G-tube. You want your kid to be
normal." I cannot describe how ANGRY that statement made me. The
G-tube has saved Wesley's life. It helps him grow, it keeps him healthy,
and it eliminates a stress from his brain that allows him to focus on other developmental
areas. Can you imagine hearing someone say “who wants a kid with glasses?”
Isn’t that the same concept? Glasses help you see…. G-tubes help you eat. Again
is it ideal? No, but I would certainly take a kid with a G-tube over no kid at
all! Wes will eat by mouth someday… when he’s ready! So next time you hear a
parent concerned about having or getting a G-tube for their child, remember
they are many pros to counter all the cons and try to look at some of the benefits you will gain from what the G-tube provides!